Returning to Work After Disability: What You Should Know

Interview with Eric Ciasullo, manager of the San Francisco
Department of Public Health's HIV/AIDS Return to Work
Initiative. Ciasullo is currently Chair of the Board of
Directors of the National Association of People with AIDS
(NAPWA), and was recently appointed to the California State
Rehabilitation Council.

Tens of thousands of people with HIV want to return to work at
least part time but are afraid of losing medical benefits, or
losing disability income and then being unable to work in the
future. Recent Federal legislation has reduced this problem, but
information, planning, and expert advice are still essential.
Many people need retraining or new skills in order to re-enter
the workforce successfully; often excellent opportunities are
available through state government rehabilitation departments,
but the HIV world has not been familiar with these services.
Others ran up huge tax, student loan, credit card, or other
debts while trying to stay alive; they may be able to
renegotiate some of these debts while they are disabled, and
should do what they can to clean up these problems before
leaving disability and returning to work.

Recently, Governor Gray Davis of California appointed AIDS
advocate Eric Ciasullo to the California State Rehabilitation
Advisory Council, which oversees the California Department of
Rehabilitation. Mr. Ciasullo has long been active in HIV
prevention, housing, and other services -- most recently in
helping people with HIV consider returning to work, and getting
any help they need to return to work successfully. He himself
has been on AIDS disability and is now working full time for the
San Francisco Department of Public Health. AIDS Treatment News
interviewed him on October 10, 2003, in San Francisco.

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In the interview Mr. Ciasullo suggested a number of resources,
most of them available on the Web. They are listed in a separate
section below. In some areas it may be difficult to find good
advice on benefits and other issues in planning for returning to
work. You might start by asking your doctor for a referral, or
asking a case manager or social worker if they could help, or
could refer you to an expert. You might check with your local
health department, especially if you do not have a case manager
already. Some questions could be answered by the National
STD/AIDS Hotline, 800-CDC-INFO, 24 hours a day seven days a
week. This hotline also has
TTY access for the hearing impaired; TTY is 888-232-6348.

In addition, the Social Security Administration funds
organizations in every state to assist beneficiaries in making
choices about work (see the Social Security service providers
list at the end of this article). The best benefits advisers in
an area may work out of other offices as well. Before talking
with an expert you might want to read background information --
for example, see the Web sites in the Resources section at the
end of this article.

ATN: Could you give some examples showing the kinds of issues
people face when leaving disability and returning to work?

Eric Ciasullo: Everybody's situation is so different. It is hard
to show a few representative examples, so much as dynamics that
occur across the board but to different degrees. For instance,
in San Francisco we've found that more than half of those
interested in work want to do something very different from what
they did before disability. Many people want to do work that
feels meaningful. Many of us have been recipients of social
services and want to give something back. We tend to be less
tolerant of activity that is not directed to a human bottom
line.

Because HIV disproportionately affects people based on race,
education and class, many of us were untrained or under-trained
workers. We may never have really been in the workplace, or if
we have, only as casual labor. We may have worked in what some
folks refer to as the "underground" or unregulated economy. We
may need to be trained in work that is not physical labor, or
where we will not be on our feet most of the time, because there
are still a lot of physical considerations with HIV. We may need
reasonable accommodations -- like being able to sit down, take
frequent breaks, nap in the afternoon if necessary, or take more
bathroom breaks than some of our co-workers. The more skilled we
become as workers, the more likely we are to work for employers
that are able to make these kinds of accommodations.

ATN: What about returning to work at least part time, earning
income and being able to keep medical benefits, or to go back on
disability if necessary?

Ciasullo: Recent changes in Federal law have made this easier
[see discussion in the "Financial and Legal ..." section below].
But still it is very important for people considering work to
meet with some kind of benefits counselor or advisor, so that
they understand the particularities of their situation, and the
impact of work on benefits.

Disabled workers with HIV are usually on SSI or SSDI. These two
Federal programs work in completely different ways. The
incentives are totally different. The attachment to health care
is totally different. State by state access through Medicaid is
totally different. Of course, most people with HIV don't have
private disability policies, but even those policies are all
written differently. Even the earning limits that allow people
to access the AIDS Drug Assistance Program (ADAP) are different
county by county. That's why it's so important for people to get
good information and advice before they make decisions about
work.

For many of us who are concerned with helping PLWHA work through
their barriers to employment, the Kohlenberg/Goldblum
Considering Work Model is helpful in describing four overlapping
arenas that need to be addressed: Medical, Financial/Legal,
Vocational, and Psychosocial. [See the Considering Work model,
in the Resources section below.]

Medical Considerations

In the medical arena it's typical for folks to be asking, "am I
really well enough to work? What if I have to change meds, or
the meds stop working? How will the stress of working affect my
health? Will my adherence be compromised -- will I be able to
take the medications correctly and consistently? Can I manage my
meals around my meds while still working? Will I be able to
manage my other daily activities while still working? Is my
health stable enough to go back to work, and what will happen if
it changes?"

For many of us, health maintenance is a pretty careful and
delicate balancing act, and integrating self-care activities
with the demands of employment can be a formidable challenge.
That's one of the reasons why many of us encourage people to
gradually increase their activities: maybe first try creating a
sort of "shadow work" schedule of training or volunteer work,
then if they can, start working first on a part-time basis.

Financial and Legal -- New Ability to Work and Keep Federal Benefits

In the financial and the legal arena, people are frequently very
anxious about what will happen to their financial and health
benefits if they start working, particularly if they're not able
to maintain their work efforts. Often we had to fight really
hard to get benefits, and it's natural that we'd be concerned
that even talking about work could jeopardize the essential
stability that those benefits provide. In fact, until just
recently, work activity could trigger a continuing disability
review (CDR) of your Social Security benefits. Fortunately,
that's no longer the case; the Ticket to Work and Work
Incentives Improvement Act of 1999, or TWWIIA, brought important
improvements. Some of the most prominent features of the
legislation are that a CDR cannot be triggered by work activity,
and if a CDR is actually scheduled, the fact that someone is
working cannot be used to demonstrate that they are not
disabled.

Also, there has been a significant increase in what people can
earn on the books, legally, while maintaining all of their SSDI
benefits, and/or a portion of their SSI benefits. This is why I
always emphasize that part-time employment is something that a
lot of us should really consider to improve our financial
situations, and to look for some of the social benefits that
come from working.

For people whose SSI or SSDI benefits are discontinued due to
earnings, there's a five-year period in which the process for
getting back on benefits is greatly expedited. The actual rules
are quite different for SSI and SSDI, though, so it's very
important to find out exactly how the different programs work.

But the anxiety remains -- what happens if I give up my benefits
so that I can work, then have to stop working? Some of these
concerns are inevitable given the uncertainties in our lives,
but some of them are rooted in old rules that are no longer in
place. A lot of folks still have a very limited understanding of
what the new work incentives are.

I encourage people considering work entry or re-entry,
especially if they have the freedom of some time, to take
advantage of training opportunities, to try to be patient enough
to look for a job that's going to be rewarding, one that has
private group health insurance, and if possible, to find an
employer with a private disability insurance policy. With those
things in place, the gamble you are making on your health is
that if you are able to sustain your efforts for a couple years,
should you become disabled and unable to work again, your
financial standing will be better than it was before you went
back to work. That should be part of the incentive that we're
creating for ourselves.

ATN: What about continuing Medicaid and/or Medicare, if someone
finally leaves disability and can go back to work but is unable
to get insurance through the job?

Ciasullo: Well, the rules are different. Medicaid is attached to
SSI, and Medicare is attached to SSDI. Medicare continues for
almost 8 years after SSDI benefits have ended. Medicaid is
trickier, because it involves both federal and state laws. Under
the new Federal work incentives, however, states have the option
of providing Medicaid to working people with disabilities whose
earnings are too high for them to qualify for Medicaid under
other existing rules. The intention -- and we will have to lobby
state by state -- is that if I am on SSI and went back to work,
I should be able to purchase Medicaid for an affordable price.
So if we organize around this effectively, and in this AIDS
activists really need to take the lead from our colleagues in
the cross-disability community, many of us will have a capacity
to buy into a state-sponsored plan even if we're not covered by
group health insurance policies.

Vocational Training

If we're honest with ourselves, many of us who are on disability
have energy that we could put to productive use. Most of us who
aren't desperately fighting for life right now might have some
ability to work with some of our time. Many experts believe that
work plays a vital role in maintaining our physical and mental
health, that it alleviates depression, contributes to a sense
that life has meaning, and keeps us engaged as active
participants in our communities. Maybe that work won't be paid
employment; it may start with sustained activity that benefits
other people as volunteer work or an internship, or it may be
school and training.

Even those of us who left the workforce with job-related skills
might find that the skills we had are out of date or no longer
relevant. Some of us aren't able to do the kind of work we
previously did, even if we don't need retraining for that job.
Or health and stamina, the vagaries of living with the virus,
might demand that we limit our activities to part-time
employment, or intermittent employment, or a job that is
basically sedentary.

The reality is that most of could find real benefit in taking
time for ourselves to deal with unresolved issues around basic
education, or to get trained or retrained for jobs that make
sense for our lives now.

State Departments of Rehabilitation

ATN: I was amazed at the employment help and services a friend
of mine was able to get in California. He does not have HIV but
was disabled in an automobile accident. With help from the
state, he has been able to return to work full time.

Ciasullo: He probably received services from the California
Department of Rehabilitation (DOR). Unfortunately most folks in
"AIDS World" are unfamiliar with these state agencies (called
vocational rehabilitation in some states). Before the recall,
Governor Davis named me to the State Rehabilitation Council, the
body that provides oversight to issues of policy planning and
consumer advocacy, to the state Department of Rehabilitation in
California. Federal law mandates that every state VR agency
seats such a Council, and it's an arena I'm hoping other AIDS
activists will start to explore.

In San Francisco, fully 15% of the clients that DOR serves right
now are people living with HIV who are looking to enter or re-enter the workforce. The San Francisco District of the
Department of Rehabilitation has shown amazing leadership in
setting up services for people with HIV and doing outreach to
the AIDS community. Unfortunately, this isn't the case
nationwide -- or even statewide -- and a lot of work needs to be
done to educate folks in "AIDS World" about the kinds of
services that the state departments of rehabilitation can
provide -- and to educate these departments about the particular
needs of people with HIV.

My friend Betty Kohlenberg is a private rehab counselor who
teaches that HIV is really very distinct from other
disabilities. It affects every body system, has social
implications beyond any other disability, maintains incredible
stigma and issues of social judgment; these issues have direct
bearing on PLWHA who are interested in re-entering the
workforce.

The fact is, many rehabilitation agencies are not familiar with
our issues. There are still a lot of stereotypes and
misconceptions, and basic ignorance about the nature of HIV
disease, that need to be overcome within many public agencies.
It is still common to hear of disability counselors erroneously
assuming that workers with HIV pose certain health risks -- like
telling their clients that they cannot go back to work in the
restaurant industry because they're "contagious" -- still
operating on misconceptions from 20 years ago and not realizing
that most HIV-positive workers pose no threat to customers or
co-workers. There is still a lot of work to be done.

The benefit of state rehabilitation organizations is that
frequently, and certainly in San Francisco, people with HIV are
getting support that just cannot be found anywhere else to help
them with training, sometimes even with college or graduate
school, along with career counseling, job placement services,
and a host of vocational assessment services. Different states
are funded to different degrees and have different rules for
operating. But even in states that are fairly well funded for
vocational rehabilitation, there is still a need to bridge the
communities, and to find funding that will help give people with
HIV the tools they need to gain access to those systems, and to
provide some of the training and outreach we need for those
systems to help them understand the needs of people with HIV.

Psychosocial Issues

Even when people are medically stable, supported with legal and
benefits information, and armed with training that can make them
competitive in the workforce, there can be a host of
psychosocial barriers to employment. Often people who have been
out of the workforce for a long time are dealing with
internalized stigma around that fact alone, let alone their HIV
diagnosis. There may be significant unaddressed issues around
depression or anxiety. Because of the social isolation many of
us experience in disability, some of us might need some help re-
entering a more mainstream environment. We may need to do it in
stages.

Getting ready to enter the workforce can also de-stabilize our
social networks. Sometimes friends and family can discourage us
from taking risks associated with returning to work, or pressure
us to leave well enough alone. Sometimes friends who are also
disabled can feel threatened by our efforts to "mainstream."
These are serious issues which need to be addressed as such --
our social networks are really important to us, and sometimes
have been the "x factor" keeping us alive this long.

For some people who have been disabled with HIV, addiction or
drug abuse was an issue before the diagnosis, or became one
after the diagnosis. So changing our relationship to drugs and
alcohol can be part of the process of work re-entry. In
California, for instance, there is a widespread acceptance of
the benefits of medical marijuana, which can be particularly
helpful in dealing with some of the nausea associated with a lot
of HIV meds -- but using it habitually can create problems in
many work settings.

And for PLWHA in the gay community, the incredible epidemic of
crystal (amphetamines) can be an obstacle to employment in a
league of its own. I don't want to talk about this in simplistic
terms, and I haven't seen any research to support this, but it
strikes me that for some of us, disability can be a gateway to
addiction -- and when this is the case, it needs to be addressed
head-on if folks are going to have any lasting success in their
efforts around entering or re-entering the workforce.

Part II of this interview will include the Ticket to Work
program, handling debts before leaving disability, current
developments around returning to work, and an expanded Resources
list.

Resources Quick List

Part II of this interview will have the full resources list.
Meanwhile, here is a list of some sites with information:

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